Another exceptionally written article. Very educational ... I got mono back in 10th grade.. in 82.. I had it for a bit before being diagnosed with it.. it started in my throat... it was beyond any sore throat I had ever experienced before and I had a lot growing up.. every other month.. I had swollen glands, tonsillitis, strep... so i was no stranger to sore throats... I continued to go to school.. I told my mother and she didn't believe me.. it wasn't until I was supposed to go to the prom with a boy from my neighborhood.. I told my mother I was sick and she still didn't believe me.. I got dressed in my gown.. and then went into my bed and fell asleep.. my mother came up and screamed.. why are you sleeping? I went to the prom.. and you could see how swollen my face and neck were.. in the photo.. but, I had to tell my date to take me home because I couldn't eat.. or swallow.. after that.. my mother took me to the doctor and they tested me.. and it was mono.. it was really bad.. my mother felt horrible... I slept a lot... I was quarantined.. and could not go back to school for a long time.. I didn't know I had EBV.. until a few years ago.. when my doctor did bloodwork.. apparently it reactivates..
Thank you for this really useful and pragmatic summary of where we are at in terms of MS prevention. As a retired neuroradiologist withSPMS living in Scotland, I read MS updates with insight and growing optimism for those affected in future. Crucially today, as a grandmother of 2, your post offers practical evidence-based advice that I have shared with my daughter. Keep up the excellent work.
Hi Ali! Thank you so much for reading and for your comments. I am glad you found this informative and helpful to your family. If there are any other topics you’d like me to address in my column, please don’t hesitate to let me know. Appreciate you!
I’d be interested in your views on current options emerging for people with progressive MS. BTKis, Ocrelizumab and metformin plus clemastine have all appeared as potential options in the MS news.
At age 63 with SPMS for 21 years, EDSS 6, not on any DMT and slowly progressing, but otherwise well, I have the dilemma of do I keep going with healthy lifestyle alone or should I be more aggressively pursuing active treatment?
The rate at which advances are being made in the MS field are staggering, almost beyond belief. It is hard for me to process this material because I had never thought the status of MS research could be so advanced. It feels as if it is on the brink of making existential advancements that will forever change the landscape of the disease. I gave up hope, a long time ago, of ever seeing improvements in the case of my multiple sclerosis. But, the hope that now does very much exist for the future is palpable and real. There will be an end to this disease sometime in the not too distant future. It makes me happy that people may not have to suffer as I have with this disease for the lions share of my life.
Thank you for these posts, Dr. Freeman. They are difficult for me to read, but truly inspiring.
Thank you so much, Aaron, for reading! I have been in practice about 20 years now, and so much has changed in what we can offer and in the outcomes we can expect. The concept of preventing MS altogether is fascinating and feels almost surreal. But the science is advancing fast, and we now have real evidence. I thought it worth sharing.
I recently participated in a research study for a new MS medication in development that targets protein cells, so that it can pass easily through the blood brain barrier. Forgive me, but I forget the name of the drug. Fascinating stuff, though. Although I understand the need for care and protocol, the amount of time it takes for these treatment modalities to become available for the patient is very, very long. I wish there were a way for a true fast-track for treatments. Likewise, I feel I have been waiting for tolebrutnib for a lifetime.
I believe I am in a similar study right now. The medication/treatment is called foralumab. It’s not from a pharmaceutical, but is under study for progressive MS, and may also have association with ALS and Alzheimer’s. Also under separate study.
I found this article very interesting and positive. Another thread to a potential root cause gives me hope.
Yes, it’s possible that it is a similar study. The drug, foraulmab, has shown promise in treating non-active SPMS, which I have, and the other diseases you mentioned. I found an informative video that explains how this drug may help with non-active SPMS: https://youtu.be/ojImnHwRUKg?si=UBLPdzV33mGagXla
Although a cure has not yet been found, it is getting closer.
Another exceptionally written article. Very educational ... I got mono back in 10th grade.. in 82.. I had it for a bit before being diagnosed with it.. it started in my throat... it was beyond any sore throat I had ever experienced before and I had a lot growing up.. every other month.. I had swollen glands, tonsillitis, strep... so i was no stranger to sore throats... I continued to go to school.. I told my mother and she didn't believe me.. it wasn't until I was supposed to go to the prom with a boy from my neighborhood.. I told my mother I was sick and she still didn't believe me.. I got dressed in my gown.. and then went into my bed and fell asleep.. my mother came up and screamed.. why are you sleeping? I went to the prom.. and you could see how swollen my face and neck were.. in the photo.. but, I had to tell my date to take me home because I couldn't eat.. or swallow.. after that.. my mother took me to the doctor and they tested me.. and it was mono.. it was really bad.. my mother felt horrible... I slept a lot... I was quarantined.. and could not go back to school for a long time.. I didn't know I had EBV.. until a few years ago.. when my doctor did bloodwork.. apparently it reactivates..
Thank you for this really useful and pragmatic summary of where we are at in terms of MS prevention. As a retired neuroradiologist withSPMS living in Scotland, I read MS updates with insight and growing optimism for those affected in future. Crucially today, as a grandmother of 2, your post offers practical evidence-based advice that I have shared with my daughter. Keep up the excellent work.
Hi Ali! Thank you so much for reading and for your comments. I am glad you found this informative and helpful to your family. If there are any other topics you’d like me to address in my column, please don’t hesitate to let me know. Appreciate you!
Hi Leorah
I’d be interested in your views on current options emerging for people with progressive MS. BTKis, Ocrelizumab and metformin plus clemastine have all appeared as potential options in the MS news.
At age 63 with SPMS for 21 years, EDSS 6, not on any DMT and slowly progressing, but otherwise well, I have the dilemma of do I keep going with healthy lifestyle alone or should I be more aggressively pursuing active treatment?
Thank you
Ali
The rate at which advances are being made in the MS field are staggering, almost beyond belief. It is hard for me to process this material because I had never thought the status of MS research could be so advanced. It feels as if it is on the brink of making existential advancements that will forever change the landscape of the disease. I gave up hope, a long time ago, of ever seeing improvements in the case of my multiple sclerosis. But, the hope that now does very much exist for the future is palpable and real. There will be an end to this disease sometime in the not too distant future. It makes me happy that people may not have to suffer as I have with this disease for the lions share of my life.
Thank you for these posts, Dr. Freeman. They are difficult for me to read, but truly inspiring.
Thank you so much, Aaron, for reading! I have been in practice about 20 years now, and so much has changed in what we can offer and in the outcomes we can expect. The concept of preventing MS altogether is fascinating and feels almost surreal. But the science is advancing fast, and we now have real evidence. I thought it worth sharing.
I wish you a beautiful day!
I recently participated in a research study for a new MS medication in development that targets protein cells, so that it can pass easily through the blood brain barrier. Forgive me, but I forget the name of the drug. Fascinating stuff, though. Although I understand the need for care and protocol, the amount of time it takes for these treatment modalities to become available for the patient is very, very long. I wish there were a way for a true fast-track for treatments. Likewise, I feel I have been waiting for tolebrutnib for a lifetime.
I look forward to your next posting. Happy day!
I believe I am in a similar study right now. The medication/treatment is called foralumab. It’s not from a pharmaceutical, but is under study for progressive MS, and may also have association with ALS and Alzheimer’s. Also under separate study.
I found this article very interesting and positive. Another thread to a potential root cause gives me hope.
Yes, it’s possible that it is a similar study. The drug, foraulmab, has shown promise in treating non-active SPMS, which I have, and the other diseases you mentioned. I found an informative video that explains how this drug may help with non-active SPMS: https://youtu.be/ojImnHwRUKg?si=UBLPdzV33mGagXla
Although a cure has not yet been found, it is getting closer.